In Iran and in the US Health Care System, Citizens’ Access to Computable Data Frees Everything!

Dedication: This post is dedicated to Regina Holliday and to the memory of her husband, Frederick Allen Holliday, who passed away on June 17. Regina’s story has energized many of us to create the Declaration of Health Data Rights we are asking you to endorse on a website or via twitter.

Definition: Data in a computable format means that its contents can be understood and acted upon by a computer software program. Data on the Internet is increasingly in the form of electronic standards, such as XML (Extensible Markup Language), that allows sharing between computer systems and some action or actions to take place without human data entry being necessary. For example, if a patient’s prescribed medications can be automatically assessed to determine if there are potential risky interactions, then that data is computable. Similarly, people upload video from their cell phone to YouTube because these individual video streams are computable.

The world in 2009 is very different from anything we have seen before. The connected age has invaded all societies and the possible repercussions are just starting to emerge, driving us into the age of consequences.

In the last 10 days we have witnessed how Twitter and YouTube have become the ultimate enemies of the Iranian leaders who tried to use the classical tools of democracy to hide a dictatorship. Once and for all we know that transparency trumps opacity! The Iranian government’s tight control of media and the Internet has spawned a generation adept at circumventing communication roadblocks, making the country ripe for a technology–driven protest movement.

The helicopters, the Basajis and all the other tools of mass fear have failed because individuals in Iran have found a way to own and control the data that is important to them at this point. The demonstrators have been using simple text messaging and videos shot from their cell phones to collect, document and transmit the visual data elements that are helping us understand the health of a nation, in real time. Their tweets, use of hashtags and uploaded images have made all of us instant witnesses. In just a few days, they have shown all of us that citizens data rights are the defining rights of our era and that data hugging is no longer possible and will cause the failure of established systems trying to control & limit data flows.

At the same time, much action is taking place in Washington DC about healthcare reform. Not a day passes without the President or a very senior member of the administration mentioning that we, as a Nation, must reform the healthcare system this year or risk a future similar to GM. Pretty grim assessment, if you ask me.

There is a general consensus about the tools that should be used to succeed in this reform. Everybody talks about the Electronic Health Record and the need to create systems that in the end will be interoperable at some level, so that the data flows can be facilitated. The experts are talking about an horizon of at least 6 and maybe 10 years before these systems are implemented and active in most of the US.

I cannot help but be shocked that young students in Tehran have, today, the ability to transmit, freely, in real time and against all odds, instant reports, images & videos (just 3 types of data element), while we, sitting in a country that prides itself to be the most advanced in the world, cannot, in general, have access to any of our health data without delay and at no cost.

I cannot accept any longer, the excuses coming from within the system to explain why I am denied this access. And neither should you!

Too many of the blog posts I have written over the last year document failures of knowledge, science, medical care and recording of all medical events because the patients have never been given, as a matter of fact, access to their health data! e-Patient Dave data transfer story provided the last proof we needed to show that healthcare reform cannot happen as long as the patients are treated as anything else than the most important stakeholder! And healthcare reform in the contemporary world cannot happen until the most important stakeholder has access to his/her health data. Just today an article showed that patients are often not told about abnormal test results.

As a Nation it is time to stand up and call for the universal recognition of our rights to access, whenever we want, a copy of any or all parts of our health data. Read the Declaration and think about it, please! It is written to start a national conversation about a topic that is fundamental and often misunderstood or just unknown. The endorsers come varied horizons, from individuals, not-for-profit organizations and corporations, large and small. We are all in agreement that these health data rights are basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient.

Please join us in making sure we have all the possibility to improve the healthcare system by taking ownership of our health and of our health data! Endorse these Rights!

Today I proudly join together with a group of leaders across health care working to establish this Declaration of Health Data Rights. The text of the declaration is clear, appropriate and extraordinarily important to us all.

A Declaration of Health Data Rights

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. We the people:

Have the right to our own health data

Have the right to know the source of each health data element

Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; If data exist in computable form, they must be made available in that form

Have the right to share our health data with others as we see fit

These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

I couldn’t agree more.
But please allow me to point out that the ICMCC Foundation already formulated such a declaration in 2007, which is now on the desk of Dr. Chang (WHO). You can find this Guideline on Patient Record Access here: http://recordaccess.icmcc.org/category/WHO.
Our focus is on having the right of access declared as a universal right.
Lodewijk Bos
President ICMCC

For the record, twitter and facebook have only been ways for iranians to communicate with the outside world. Within iran itself most of the communication about rallies and the like have been transmitted through SMS (aka cell-phone text) messages.

As far as access to medical records, when most of the medical information in the country is still on paper, insisting upon access to electronic data is putting the cart before the horse. The vast majority of medical/treatment/outcome data is not even stored in any electronic system but rather in paper files locked in a drawer in your doctor’s office. Lets worry about getting the stuff electronic before we worry about who can access it and when. :)

Don’t you think that systems that produce digital records will be different if they are doctor-centric or if they have to produce copies of the record, on demand and at no cost?

It is because most of these systems have not been implemented that we have a responsibility to make sure that all future implementations are based on the rights we address in the Declaration. As we know, redesigning systems at a later stage becomes often impossible and always expensive. If my right to all my health data is a basic right, any design of health data recording and transmitting systems must take this right into account, as a fundamental design element.

Finally SMS messages are just another type of data element. Computers & routers don’t care what bits transmit. They are essentially data agnostic.

I’m not sure I understand your first question. The duplication issue is not really a problem – once the data is electronic it can be copied on demand. There is a separate issue of TAKING that data into another system which does incomplete/incorrect translations upon it…

You’re absolutely right about software redesign, but one of the challenges to making this health data available is the HIPAA act. As soon as you expose patient data in an electronic system you are legally liable. I’ll give an example – at our institution, doctors want to get away from having their primary care patients fill in paper forms. The perfect solution would involve a tablet PC that the patient could directly enter the information into. Issues with this approach:

– Who maintains the patient login information? Who resets passwords when the patient forgets them? Who is responsible if the patient shares that login or it is otherwise compromised?

– If the tablet PC is lost or stolen, the institution is liable for any patient information lost. This means the content of the machine should be encrypted, which means an expensive software encryption-solution. What happens when the nurses forget the password to that and the hard drive becomes useless?

– A tablet PC operates over a wireless network. There are SERIOUS security risks in transmitted patient information over a wireless network.

– The quality of data you get when a patient enters the information directly is quite low (there is much research in the literature on this topic). The current model of having a patient fill something out on paper, having a nurse or other clinical staff review it with the patient, and then allowing the data entry to happen later tends to yield more correct (and hence more USEFUL) data quality and completeness.

And this is just the beginning! Say a doctor’s office wants to implement this solution. Lets look at costs:

– Tablet PCs cost at least $2000 each and you will need several, plus some spares. Say $10,000-$20,000 just for the equipment.

– The data capture mechanism has to be put in place to HOUSE this data. MS Access databases are obviously not good enough. If you have an existing EMR then you’ll need to build a collection mechanism or you’ll have to buy some third-party product anew. Cost could be enormous.

– If you don’t have a wireless network, you’ll need to install one and ensure that if you are ever audited you can prove that it is HIPAA compliant.

Again, this is just the tip of the iceberg. We haven’t even addressed the staffing issues (who enters old data? ensures that the new stuff is accurate?). There are serious serious obstacles to address before we can even worry about patients accessing their own data. Many institutions would be TERRIFIED to expose patient data directly through a patient portal due to the inherent HIPAA-related risks that this involves…

And related to SMS: my point was that most of the iranian protesters have been using SMS as the end-product. That is SMS phone-to-phone, not SMS to facebook or SMS to twitter. Although SMS messages and data-content agnostic, PHONES are not data-agnostic. :)

The failure rate was higher at some doctors’ offices, as high as 26 percent at one office. Few medical practices had explicit methods for how to tell patients, leaving each doctor to come up with a system. In some offices, patients were told if they didn’t hear anything, they could assume their test results were normal.”

Dear Ben,
No cart is before the horse. The hospital my husband was admitted to had everything on computer. They had made the choice to have an integrated system. They had the ability to print off my husband’s entire record in 1 1/2 hours after they figured out what they were looking for. I have everything:Doctors notes, Nurses notes, Test result, medical reconciliation… They completed transfer from that hospital without a current face sheet or transfer summary.

I had to go back and get the record the next day. I had asked a week before discharge for the complete medical record. I was quoted 73 cents a page and a 21 day rate. This was on a Friday. I checked back on Saturday to see if any progress had been made. The weekend clerk could not find my request. I pointed to the pile of paper where I had seen it placed. She said it wasn’t there and to come back during the week. I came back on Monday. The paper request was still exactly where it had been left on Friday. I filed a complaint with the supervisor for the lack of action on the part of the staff.

My point is this. The data was there. It wasn’t that hard to print out. If you wanted to save paper, I bet it could have been emailed or burned to a disk or zip. We did not have access to that data. It would have made a difference. There is no one who will comb through reports like a concerned caregiver. I found 13 major mistakes when I went through it in a six hour time span. I do not have a degree in medicine, but I am intelligent and caring.

Who do think reads all this data? My husband’s record is over 200 pages. I asked that question to a lot of nurses. The answer was pretty uniform.

Regina, your example is in some ways typical and in other ways atypical. The fact that your medical provider had the data available in an electronic system should not be assumed to be the norm. Else why would there be such a huge push for a national medical record, if one already existed? :) I can say with certainty that for most hospitals and treatment centers, patient health records are either partially electronic or not electronic at all. You cannot print out information that exists only in a paper file… You could photocopy it, but then it’s not really “data”

The issue of making available to patients information which IS electronic is a separate issue, and your example is telling. You will find similar barriers elsewhere but some places do that sort of thing very well. There are no HIPAA issues around giving a patient a paper copy of electronic data that you have on their health information, but it is VERY dangerous to release electronic records, especially if you make a mistake. With the new HITECH law, if a nurse gives John A. Smith all electronic health information for John A.W. Smith by accident, then that nurse is PERSONALLY liable for the breach, which means that she could lose her job. Many institutions would prefer to stick with paper than be faced with the liability issues inherent in electronic patient records.

Sad but true. Until the regulatory environment (read: security and privacy laws) are relaxed, this will continue to be a significant barrier to adoption of electronic health systems.

[…] husband Frederick lost his battle with renal cell carcinoma. Regina’s story helped galvanize a group of healthcare stars to create the Health Data Declaration of Rights. The Declaration got coverage in the New York […]

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Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual's health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.